Tymlos blood pressure side effects etc. very nervous! Help…

Just discovered this Mayo clinic site and so happy to communicate with others who have similar experiences with spine health. As a pre-surgery requirement for a spinal fusion, I had a bone density test and learned I have severe osteoporosis. This result delayed surgery by 3 months while I went on a daily routine of Tymlos injections. Now, 3 months post-surgery, the severe osteoporosis has reversed to osteopenia--not usually a good diagnosis, but good in my case. Tymlos caused headache, nausea, and racing heart on initially prescribed dosage. Lowering the dosage didn't change these side effects. Can't say for sure if the side effects decreased with the lower dosage, or if I've learned to live with them. However, I do know it helps to inject Tymlos just before bedtime. The side effects are not felt during sleep. Also, full disclosure, my neurosurgeon also prescribed Vitamin D pre-surgery; post-surgery I wear a brace 4 hrs/day that emits sound waves that stimulate bone and tissue repair. Additionally, I'm 79 yrs. old and have been on bio-identical hormone replacement therapy (BHRT) for the past 20 years and take a compounded prescription that also aids in sleep. This may account for the fact that once asleep I'm not aware of Tymlos side effects. I don't know if it was strictly the Tymlos, or a combination of prescribed treatments that have helped reverse the severe osteoporosis diagnosis. There are nights I'm either too tired or just don't want to take the daily Tymlos injection. Osteoporosis is a silent killer and I remind myself that Tymlos is a matter or life or death; and, at the very least osteoporosis can rob me of a quality of life. So, I prepare the Tymlos pen and prepare for the side effects, then climb in bed. Because the consequences of not taking Tymlos outweigh the discomfort.

Thanks…you are always a wealth of conformational information!

Just discovered this Mayo clinic site and so happy to communicate with others who have similar experiences with spine health. As a pre-surgery requirement for a spinal fusion, I had a bone density test and learned I have severe osteoporosis. This result delayed surgery by 3 months while I went on a daily routine of Tymlos injections. Now, 3 months post-surgery, the severe osteoporosis has reversed to osteopenia--not usually a good diagnosis, but good in my case. Tymlos caused headache, nausea, and racing heart on initially prescribed dosage. Lowering the dosage didn't change these side effects. Can't say for sure if the side effects decreased with the lower dosage, or if I've learned to live with them. However, I do know it helps to inject Tymlos just before bedtime. The side effects are not felt during sleep. Also, full disclosure, my neurosurgeon also prescribed Vitamin D pre-surgery; post-surgery I wear a brace 4 hrs/day that emits sound waves that stimulate bone and tissue repair. Additionally, I'm 79 yrs. old and have been on bio-identical hormone replacement therapy (BHRT) for the past 20 years and take a compounded prescription that also aids in sleep. This may account for the fact that once asleep I'm not aware of Tymlos side effects. I don't know if it was strictly the Tymlos, or a combination of prescribed treatments that have helped reverse the severe osteoporosis diagnosis. There are nights I'm either too tired or just don't want to take the daily Tymlos injection. Osteoporosis is a silent killer and I remind myself that Tymlos is a matter or life or death; and, at the very least osteoporosis can rob me of a quality of life. So, I prepare the Tymlos pen and prepare for the side effects, then climb in bed. Because the consequences of not taking Tymlos outweigh the discomfort.

Just discovered this Mayo clinic site and so happy to communicate with others who have similar experiences with spine health. As a pre-surgery requirement for a spinal fusion, I had a bone density test and learned I have severe osteoporosis. This result delayed surgery by 3 months while I went on a daily routine of Tymlos injections. Now, 3 months post-surgery, the severe osteoporosis has reversed to osteopenia--not usually a good diagnosis, but good in my case. Tymlos caused headache, nausea, and racing heart on initially prescribed dosage. Lowering the dosage didn't change these side effects. Can't say for sure if the side effects decreased with the lower dosage, or if I've learned to live with them. However, I do know it helps to inject Tymlos just before bedtime. The side effects are not felt during sleep. Also, full disclosure, my neurosurgeon also prescribed Vitamin D pre-surgery; post-surgery I wear a brace 4 hrs/day that emits sound waves that stimulate bone and tissue repair. Additionally, I'm 79 yrs. old and have been on bio-identical hormone replacement therapy (BHRT) for the past 20 years and take a compounded prescription that also aids in sleep. This may account for the fact that once asleep I'm not aware of Tymlos side effects. I don't know if it was strictly the Tymlos, or a combination of prescribed treatments that have helped reverse the severe osteoporosis diagnosis. There are nights I'm either too tired or just don't want to take the daily Tymlos injection. Osteoporosis is a silent killer and I remind myself that Tymlos is a matter or life or death; and, at the very least osteoporosis can rob me of a quality of life. So, I prepare the Tymlos pen and prepare for the side effects, then climb in bed. Because the consequences of not taking Tymlos outweigh the discomfort.

@memuno1stborn I was on Forteo injections for two years. It also reversed my osteoporosis, with few side effects. I am now on Evenity to see if I can get more results in my hips. Have you asked your doctor to change drugs? Do you have a good endocrinologist or rheumatologist monitoring your medications? Forteo is similar to the Tymlos you are taking and might not have as many side effects for you.

@memuno1stborn It sounds like you are doing everything you can to keep on to of it. I wish I had started some hormone replacement back when I was eligible. Now 18 years postmenopausal, they say it would be dangerous to start.
What is the sound wave brace you wear? That sounds like something I'd like to try!
As for Tymlos, I had those reactions at first. I cut back to 6 clicks and stayed there, and eventually the reactions stopped, but I had to stay at that dose. I did have some improvement after 2 years.

@susyt : I also was placed on 6 clicks vs. the full dosage. I don’t know what you mean by some improvement, what stage of osteoporosis you had when starting with Tymlos, the stage of osteoporosis you’re now at, or your age. There’s so many variables that go into a person’s journey, and each doctor has his/her own methodology based on knowledge, experience, and sound innovation. The sound wave brace is called SpinalStim by Orthofix.
I wasn’t aware that there is an age limitation on hormone replacement. I don’t understand why it would be dangerous because I’m nearly 80 years old. There are several types of hormone replacement. I chose bio-identical hormone replacement (BRHT) rather than the typical (at the time) animal-based derivative. Thirty years ago, hormone replacement was not a widespread practice (especially BRHT) and often ridiculed, and sometimes still is. I found a doctor who changed my life for the better with BRHT. I moved to 2 different states since then and always searched for a physician who understood and was knowledgeable about BRHT. From what I’ve researched, doctors who specialize in women’s health and aging are your best bet on obtaining information on hormone replacement therapy. Now, because of my driving limitations and because my doctor is a good 40-minute highway drive, I’m considering searching for a doctor who is in closer proximity to me. I’ve been with this doctor for 15 years and really don’t want to make a change, but now with the spinal fusion and the older I get, the driving is becoming an obstacle.

I plan to start on Tymlos soon vs Forteo, with hopes I will have minimal side effects. (I was offered both by endocrinologist).
From the data I’ve read Tymlos appears to get SLIGHTLY better numbers of bone increase in the spine compared to Forteo.
My spine has compression fractures, the reason I’m starting a two year antibiotic therapy. Followed by (to be determined brand) an Antiresorptive Rx to maintain new bone.
**My question for experienced osteoporosis friends here, How do they determine my spine improvement??
Since last DEXA was 2017 of L3-4 because L1-2 couldn’t give a good reading. And all DEXA’s after 2017 they only did total hip, femoral neck total forearm and, 1/3 and UD forearm? They “can’t do the spine higher up b/c ribs get in the way”. (Lower spine part is pretty messed up).
How will I know if after 1 year and then 2 years I’ve improved from 2017 last spine reading of L3-4 of - 0.9.1?
Thank you very much.

@countryliving, good choice between two excellent choices. I like bone markers CTX and P1NP to determine spine improvement. Partly because it takes longer for the pth drugs to manifest with bone mineral. But also because, for the very few, the medications aren't effective. And who wants to spend two years on a drug, (hopefully, not) tolerating side effects if the medication isn't effective for them.
You might be procure the new biometric CT, covered by Medicare starting in October in lieu of dexa. https://ondiagnostics.com/about-on-diagnostics/about-on-diagnostics/
Otherwise they will compare the bone mineral content with your last dexa in the areas last measured including L3 and L4. You might find this video interesting https://www.youtube.com/watch.